Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

There is an interesting quote from Eisenberg. I wonder if Garner knows it.

The role of the Social Sciences

Most patients treated by most doctors get well most of the time. That good fortune for patients - and for doctor's reputations - creates a problem for the practitioner. It is difficult for the doctor to avoid concluding that the patient improved because of what he or she has done.
The difficulty is compounded because existing patterns of medical practice do not provide information on the denominator; that is the relevant population in the community from whom the sample seen in the office is drawn..

Is there too much science in medicine or not enough? A position paper. 1986.
In Illness behaviour - a multidisciplinary model eds McHugh and Vallis
 
Cochrane website page with links to most of Paul Garners articles, interviews (worldwide) etc

Co-ordinating Editor, Paul Garner, discusses his experience of having COVID-19

CIDG Co-ordinating Editor, Paul Garner, outlines his experience of having COVID-19 in several recent news articles.

Since mid-March 2020, when he developed COVID-19, he highlights that the past months have been "a rollercoaster of ill health, extreme emotions, and utter exhaustion. Although not hospitalised, it has been frightening and long. The illness ebbs and flows, but never goes away".

Paul notes that "health professionals, employers, partners, and people with the disease need to know that this illness can last for weeks, and the long tail is not some “post-viral fatigue syndrome”—it is the disease. People who have a more protracted illness need help to understand and cope with the constantly shifting, bizarre symptoms, and their unpredictable course".
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https://cidg.cochrane.org/news/co-o...rner-discusses-his-experience-having-covid-19
 
Blimey that's a very long list. It astonishes me that Cochrane would provide publicity for a self publicist touting his n = 1 ancedote around the world so prolifically, even if he is a senior Cochrane editor. Eminence based medicine seems to have taken over Cochrane.
 
This article was going well until . . .

PG is making his 'mark', as you say n=1 everywhere. It's truly baffling.

What Does Recovery Look Like?
Currently, there is no treatment for long COVID. While researchers search for treatment options, managing symptoms is often the most that doctors and patients can do. Many are taking cues from the Chronic Fatigue Syndrome (CFS) community, which has been managing long-term fatigue for years.

One study found increased use of opioids to manage the symptoms of long COVID, a practice which many doctors are discouraging and raising alarms about. The same study found increased prescriptions of antidepressants and anti-anxiety medication to address the mental health burden of long COVID.

Paul Garner, a professor at Liverpool School of Tropical Medicine, has spoken out about the importance of centering recovery stories in our conversations about long COVID. He suffered from long COVID, and for a while believed he would never get better.

“What happened to me just went on and on and on and I kept adjusting my time of recovery,” Garner says. “Two weeks, six months, by the end of the year. I went into a state of mind where I wondered whether I'd get better at all.”

But then he did get better. Accepting his illness and speaking with other people who had recovered from similar conditions paved the way for his recovery, he says. He’s sharing his story to give people hope: the impacts of long COVID are real and severe, but he wants people to know that recovery is possible.
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https://www.discovermagazine.com/health/what-we-know-and-dont-know-about-long-covid

What bothers me more is that CFS (or ME) is linked to his name.
 
The page about Paul Garner's experience with covid was created on or before June 17 2020: https://web.archive.org/web/2020061...rner-discusses-his-experience-having-covid-19, well before he cured himself by thinking positively or whatever. So originally the page was just about his personal experience with covid (and now it's unfortunately about his great personal discovery about how post-viral conditions work)

Paul Garner's writings about his long covid experience always seemed to have a significant confidence about his own observations, whilst also being mixed with a willingness to believe what other people told him about his condition. He also initially talked about how what he had was not "just" post-viral fatigue, which may have been a hint for his views of ME which would later emerge. When you think about it, I think in many ways his behavior after recovering is consistent with his behavior before recovering.

Unfortunately, when he recovered, he was following the advice of some Norwegians with particular views, and not the ME community, so they get the credit for curing him.

We all have our personality flaws and personal biases. Getting a very unpleasant post-viral syndrome which makes your life very hard can be very shocking and hard to deal with. I think everyone in this forum has been unwell for a very long time, so memories may not be that fresh, but the inital phase of getting ME or it deteriorating significantly is extremely difficult and shocking to deal with (even if someone is still relatively functional, as Paul was). Having something that makes sense of that is nice, in the face of such uncertainty and changes to your life and functioning. In that context, I think his behavior makes sense.

I'm not sure whether his views can really be changed. People should point out that his experience is n=1 and his advice could have negative effects, but that's about the best that can be done. Besides that, I think people should have and show empathy for him. His behavior does clearly demonstrate how difficult post-viral conditions can be, and he's gone through an unpleasant experience which has some resemblance to what most people in this forum have gone through, which most people don't go through.
 
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I have no problem with an individual reflecting on their journey through a nasty post viral experience and writing about it in a personal capacity.

The part I think is unacceptable is combining that with his professorial status and using that to push a particular point of view that may harm others. And Cochrane and the BMJ endorsing it.
 
petrichor said:
His behavior does clearly demonstrate how difficult post-viral conditions can be, and he's gone through an unpleasant experience which has some resemblance to what most people in this forum have gone through, which most people don't go through.
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His behaviour is insulting and irresponsible, and does not reflect the experiences of pwME by making comments such as 'disarming'' ME/CFS.

His dismissiveness towards pwME when they tried to explain their experiences says a lot about him.
 
Trish said:
Blimey that's a very long list. It astonishes me that Cochrane would provide publicity for a self publicist touting his n = 1 ancedote around the world so prolifically, even if he is a senior Cochrane editor. Eminence based medicine seems to have taken over Cochrane.
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It doesn't surprise me at all I think Cochrane is really a club of members who say what they want but feel better about it as they use the word 'evidence'
 
Can Cochrane just fold already? What is even the point of this organization when one of its "experts" in "clinical evidence" goes around with his little N=1 self-story of magical thinking beating 90% odds? What a clown show. And this, this thing has actual power over millions, destroying lives. And it's the "golden standard"?

Please, end this sorry experiment, these people are unable to fulfill their role in this, and guaranteed that this will not even have 1 person within the organization pushing back on this, meanwhile people were up in arms about literally applying Cochrane's own standards and policies. This has gotten beyond ridiculous.
 
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